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The Process to my invisible illness and final diagnosis: ACNE Part 3

Hi all, welcome back to the reality of unseen illnesses blog, sorry it has taken me a while to write the third part of this story, I was currently bed ridden and detained in a hospital bed for a week with no laptop or energy to be able to write about it, but that’s a whole other story in itself which I will write about shortly after this one.

In part two of The Process to my invisible illness and final diagnosis: ACNE, I had just discussed and shared some of my experiences whilst being at Monash for a few months, having numerous neurological tests done, only to find minor nerve damage in my leg but never able to find the cause. Which led doctors to the conclusion that it might be a psychiatric illness, something called Somatoform disorder, which is : A group of psychological disorders in which a patient experiences physical symptoms that are inconsistent with or cannot be fully explained by any underlying general medical or neurologic condition. Or in layman’s terms it means : That I was perhaps not dealing with an underlying psychological issue, such as depression etc, which then caused a physical reaction in my body such as PAIN!

This meant that these health professionals were ready to just transfer me off to the Mental Health team to a program called ‘Stepping Stones’, which was basically a Mental Health Institution for Teenagers and Young Adults. (I know I am re capping on some of my previous post but it is just to help the flow of the blog.) I remember being pushed in a wheelchair having a tour of the ‘Stepping Stones’ ward, clothes packed and I even manage to have my own room, but something just felt off to me, it felt weird, I just knew that in my heart I wasn’t suppose to be there. In that very moment, that is when something started to change, a fire started to burn within me, I knew I had to start doing something to help myself, I had to start believing in myself again and thinking positively. So I opted for out patient psychology, which was better for me anyways as the Psychology offices were located in Frankston, which was literally down the road from where I was living at the time which was In Karingal, in Victoria. It was an amazing experience within my body, it was like as soon as I started to believe in my self, despite still having the pain, I was suddenly able to walk by myself again, dress myself, go back to school and continue to do year 11 and 12.

After a few years of doing okay, my mum and my sisters decided to move to Sunny Queensland as all of my mums side of the family was already living up there. I decided to stay in Melbourne and finish my VCE (Or OP as the Queensland folk call it), because I had missed most of Year 11, I chose to do Year 12 over two years and that was the best decision I ever made. I was living in Melbourne with Kat’s mum, whilst Kat was living at her dads house so we still saw each other pretty much every weekend. I think living away from my family even though I missed them gave me a sense of growth and responsibility, I was now fully looking after myself and had a new sense of life.

However things started to go a bit pear shape again when I turned 18 as the Mental Health outpatient psychologist that I had been seeing were only for Young Adults and I had to see and try and pay for an adult one myself living by myself I had like minimal to no money to pay for these things and of course their was some relationship issues at that point in time. After a few years of constant health professionals telling you its in your head you, a part of you starts to believe it. So now I was anti depressants that didn’t really do much other than make me gain weight and made me sorta sleepy, which just made me feel more depressed. So once year 12 for the second time was over , I decided to move up to Queensland and be closer to my family knowing that Kat was going to move up within the next few years two.

Once settled into Queensland life I started noticing and experiencing symptoms in my abdomen, I was either constipated, or had bleeding or  other weird bowel movements and was experiencing excruciating pain in my abdomen. So I went through the series of my normal steps, find a good GP in Queensland that my mum recommended, he ordered some normal tests, such as bloods, urine, stools and then when I was still having problems he ordered a bit more things like ultra sounds, CT’s. When they came back normal, he referred me to specialists and surgeons who then said it may have been irritable bowel syndrome, so I changed my diet, when that still didn’t change anything, they sent me to see a surgeon again and her team, then referred me to a pain specialist.

So after a few months of having multiple health professionals look me over and go to the usual you are in the “too hard basket” it “must be in your head” , I was referred to a wonderful pain specialist who goes by the name DR. Heidi Feberwee , who was someone that was able to look beyond the obvious type of answers. I still remember my first meeting with her, I was running late, so I literally only had 10 minutes with her in her office as she was extremely busy. I remember sitting down with her discussing my symptoms, where about’s my pain was in my abdomen, she told me to lay on my back, pressed on a few places in my abdomen, said where I felt the most pain, she told me to get back in a chair, looked me in the eye and she said “I think you may have something called ACNE” and I was so confused , started touching my face, looking for pimples, I was like ” What are you talking about I don’t have ACNE?” She laughed and said ” No, I think you have something called Abdominal/ Anterior Cutaneous Nerve Entrapment disorder, which is when : Anterior cutaneous nerve entrapment syndrome (ACNES) is a condition that causes chronic pain of the abdominal wall. It occurs when terminal branches of the lower thoracicintercostal nerves (7-12) are ‘entrapped’ in abdominal muscles, causing a severe localized neuropathic pain that is usually experienced at ventral portions of the abdomen. It is frequently overlooked and unrecognized, although the incidence is estimated to be 1:2000 patients.[1]     

She then told me to research it , So I did, she explained that the only treatment was a nerve injection ablation, which basically means burning of the nerves. She booked me in for that treatment, I remember going in for my first treatment/ operation and freaking out because it was the first major thing I had ever had done. During the first half of the procedure you lay awake, the anesthetist gives you a local and Heidi puts a numbing cream over you abdomen and then inserts a giant needle into your abdomen, using an ultrasound machine she moves the needle around till she pin points the nerve, they test the area with a type of an electricity thing and once I can feel it quite a lot on a minimal setting, the anesthetists up my dose and put me to sleep, they then continue with the ablation of nerves and send me to recovery.

It was amazing after the injections, I went home a bit bruised, but once the bruising went away I was FINE! It was like a miracle, suddenly all the pain went away from my abdomen, it also went away from my hands and legs, I started living a healthy life again, losing weight, didn’t rely on pain meds and for the first time i believed in myself again. It wasn’t in my head, it never was, we just were looking in the wrong spot.

I guess the moral of my story and so many of my stories is you know yourself, you know your body. TRUST YOURSELF !!!

Lauren x

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The Process to my invisible illness and final diagnosis : ACNE Part 2

Welcome back to the reality of unseen illnesses blog, thanks for reading. In my previous post I started discussing the journey of my invisible illness and how we came to the conclusion that I needed to go to hospital to get some clear answers. This is part two of that story.

Some parts I remember quite vividly and some parts are still very hazy but I shall try and do my best to explain everything to you. It was the day after Katrina’s 17th birthday, I was only 16 at the time and had been staying with my grandparents, they had a friend who was a doctor in neurology who suggested I come in for some tests at Monash Hospital, Clayton, Victoria. I remember being admitted in to emergency quite easily only because my grandfather entered emergency at the same time as me because he had hurt his back. They had already given him so many pain killers that he came round to check up on me and kept asking for my jello which was fine cause I didn’t want it anyway, yet still till this day he claims he never remembers this conversation, he must have been on some pretty powerful stuff.

I wasn’t in ED for very long, I saw a few doctors who saw how much pain I was in they gave me all kinds of medications, even severely strong medications and yet the pain wasn’t any better. They could see that I wasn’t able to walk, shower, eat, dress etc by myself so they soon decided to admit me and transfer me to the children’s ward. I remember travelling in a wheel chair to the lift, going up the lift and entering the children’s ward. The walls were painted yellow and purple , you could see the nurses station as you entered the floor and the starlight room was opposite. They wheeled me down a hallway past all the girls with the eating disorders and into a nice quiet room, with a computer opposite in the hallway that the kids used to study whilst in hospital. I got settled in for a few days, nurses and doctors kept coming in and out trying to do numerous amounts of tests. I don’t remember much as I was on a lot of medicine, which soon switched to IV medicine, it got so bad that morphine didn’t even help me, that they had to put me on a drip that was one thing lower than cannabis, they said to be careful because I could have hallucinated on that drug. I don’t remember seeing anything, but I do remember hallucinating a really bad smell. I only stayed in that room for about a week and then the nurses/doctors decided to transfer me to the other side of the hallway to a room with 3 ten year old’s. Now I had never been a very assertive person before then, I was always quite shy, hiding behind people, was polite and let people some what walk over me and a big part of my illness which I have now grown out of is that I disliked change. So when the nurses/ doctors decided to move me, I finally stood up for myself, not that it did me any good cause I still ended up in that room with the ten year old’s and in retrospect looking back now I probably behaved just as bad as a ten year old.

Once I was finally settled into this new room, I remember bits and pieces of different tests, I remember going up through the chain of doctors till I reached the head of Pain at Monash and the head of Neurology and within no time I had pretty much seen every doctor in that hospital and the whole hospital was taking about me. Some of the test that I had done were so painful, the main ones that still till this day stay stuck in my brain are the most brutal ones. The first one I remember quite clearly was when I got wheeled down to a tiny room where you lay on a bed and they first connect you up to some electrode stuff, then without anesthetic the doctor placed a needle or a rod into my leg and moved it around as if it were a gamer’s joy stick just to find if there was nerve damage. If it wasn’t there before I was certain there would be some after that procedure. I remember coming back from that procedure and I was crying and silent, I would not talk because it was one of the most painful things I had to endure. The second most painful procedure/ test that I remember having done was a Lumbar Puncture which is : The procedure of taking fluid from the spine in the lower back through a hollow needle, usually done for diagnostic purposes.

lumbar puncture

This was one of those unfortunate, unlucky things to happen to me, they had me lay up on a surgical metal type table, just casually left the door open for anyone to come in and see, did not give me any anesthetic before this procedure either and then decided that not 1, not 2, but 3 Interns would attempt to do this painful procedure before getting a head consultant to do it and to make things worse I had singing clown doctors in my face. Now I know the clown doctors were only there to try and help distract me but to someone who is in heaps of pain crying and then sees singing clowns in their face is a bit creepy. To make matters worse after the Lumbar Puncture, I then had to go back to a room full of Ten year old’s with a severe migraine, I wasn’t allowed to move and Nickelodeon had a sponge bob marathon running. Still till this day I hate sponge bob, it was so unbearable that I got up out of my bed and went and laid in the parents room. When I was finally able to return to my room I slept , but when I wasn’t asleep I still had this major headache even on strong pain killers, so the head of Pain came to see me and he said the best thing for it is “Caffeine” apparently caffeine helps migraines. So mum went and brought me some V’s, However because I had been on a cocktail of medicines and now every time a nurse entered my room she told me to chug V, I ended up throwing up so much brown vomit everywhere and have never ever drunk a V again.

I was at Monash for quite a few months, we even celebrated my sister Rachael’s birthday in the Hospital, my Friends from Drama had organised beautiful fake flowers with cute notes on them and my best friends Katrina, Rach and Sharna had organised a very special T-Shirt with drawings and lovely messages from all my friends in and out of school. I still have that shirt till this day and when ever I’m feeling down I just look at that shirt and remember there was a worse time and I will always be loved.

 

 

After a few months of mean physiotherapists, which then changed to a nicer one, harsh drugs, harsh tests and only minor results of finding minimal nerve damage in my legs, the team at Monash decided that I had now become a part of the “Too Hard Basket” ad I was sent to the “Stepping Stones” program, which was basically a mental health rehabilitation area for children and young adults. At this point in my life a major security blanket of mine was my mobile phone. It didn’t even have to be on or anything or even have a battery in it, I just wanted, but because of the no phone rule in the mental health department area they wouldn’t let me have it. I remember being wheeled through the halls, seeing the rooms, I was packed, I had clothes ready to stay and the hospital had even managed to give me a room by myself, but then a thought struck me, I AM NOT CRAZY!. I am not making this up and I do not believe I need to be in here. It was at that moment that I stopped feeling sorry for myself and decided I would get better by myself, so I Opted for out patient psychological help. This is when I truly changed, when I suddenly was able to be assertive and  stand up for myself, its funny you know because when speaking to out patient psychologists they actually said that if I had ever entered and stayed with the stepping stones program it wouldn’t have helped me, it would have actually made it worse.

 

In part 3 of The Process of My Invisible Illness to the final diagnosis: ACNE , I will discuss how I found the most amazing doctor who diagnosed me within less then 10 mins.

Thanks for reading, keep educating people on invisible illnesses.

Lauren x